Date: 20 May 2019
An Oxfordshire girl who suffered with severe eczema has praised an NHS research trial that has helped her painful condition clear up.
Nine-year-old Honor Stanmore, of Witney, said her eczema has improved since taking medication for a study at Oxford’s Churchill Hospital.
She spoke ahead of today’s International Clinical Trials Day (20 May), an annual drive to encourage the public to take part in health research. This will be marked by public information events across Oxfordshire this week.
This comes as a survey of 412 NHS research participants in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire found that 94 percent had a good experience of taking part and 92 percent would volunteer for another study.
From when she was born, Honor suffered with painful inflamed skin all over her body which caused her to lose sleep and she was often too tired to attend school.
She said: “I didn’t like it because other children would ask why I had a red face or if I had chickenpox. It’s really sore and it stings. Sometimes it feels like the itch is so deep down in my skin that I can’t get to it when I scratch. I had to stop going to dance and swimming classes because of my eczema.”
Eczema is a condition that causes the skin to become itchy, red, dry and cracked. Scratching the itchy skin can disrupt sleep and cause bleeding and infections. It can also make itching worse, leading to sleepless nights and difficulty concentrating at school or work.
Honor said: “I feel a lot better now and I’m glad that I’m sleeping again. It’s sore sometimes if I’ve been scratching but it’s much better and I can live with it now.”
Honor’s mother, Laura Klee, 36, said: “The lack of sleep has been the biggest killer. She had broken nights from when she was a baby right up until she was seven. The bedsheets used to be covered in blood in the morning from where she had been scratching all night.
“Some nights she'd be screaming and pleading for me to help her, so I'd end up giving her bath or taking her on a drive at 3am just to distract her from itching.
“She still gets anxiety and stomach aches at night time because she associates it with really long, horrible nights where she was awake for hours itching.”
Honor has been living with eczema since 2010, when she was four weeks old. However, Ms Klee was able to treat it with steroid creams until 2016, when it got more severe.
Miss Klee, a home support worker for Age UK, said: “She was so bad that she couldn't eat because she had eczema all around her mouth, so it was very painful to stretch her mouth open and foods like tomatoes would sting.
“That's when I thought ‘right, this isn't good.’ It wasn't just hobbies and schooling that was being affected, it was her basic levels of living that she wasn't able to do without any discomfort. She itched from the minute she woke up to the minute she went to sleep and became depressed.”
People with eczema have an overactive immune system which makes them more sensitive to irritants, causing inflamed skin. Medications for eczema work by dampening this.
The TREatment of Severe Atopic Eczema Trial (TREAT) is comparing two eczema medications - methotrexate and cyclosporine - to see which is most effective for treating severe eczema in children. Honor was given methotrexate, which she has continued using since finishing the trial in January 2018.
The study - which closed in February - was led by King’s College London and funded by the National Institute for Health Research (NIHR).
Honor enrolled on the study in April 2017 after her mum was told about it by research nurse Teena Mackenzie. Ms Klee said: “We had been offered methotrexate before, however I'd turned it down as the thought of something suppressing her immune system worried me. The fact that it was being offered as part of a trial meant that it was incredibly well monitored, so I felt happy that she was in very good hands.”
Honor’s eczema started to improve three months after beginning the trial. Miss Klee said: “Taking part in the trial has completely transformed our lives. Before it was rare that Honor slept through the night, but now we're pretty much guaranteed a good night's sleep. Her attendance at school is the best it's ever been and she's going to all of her clubs again.
“You hear about eczema and know its not a particularly nice condition, but I had no idea that it could be life changing. It can ruin people's lives and affect their family's lives.
“The staff have also been amazing and our research nurse, Teena, has gone above and beyond to make sure we’re well looked after.”
Honor also had her skin looked at by researchers as part of a University of Nottingham study to help improve the diagnosis of a similar skin condition, psoriasis, in children.
Consultant dermatologist Dr Tess McPherson, TREAT’s principal investigator at Oxford University Hospitals NHS Foundation Trust, said: “Trials like this are giving us very useful information about how effective and safe treatments for eczema are. There is a great need for these treatments and we need good evidence to support their use.
“We are particularly grateful for the patients and families who are helping with the research.”
Figures released today show 870,250 people took part in 6,106 NIHR-backed research studies across England in 2018/19, up from 725,333 people in 5,804 studies in 2017/18.
Patients are encouraged to ask their doctor about research opportunities and search for studies seeking volunteers at www.bepartofresearch.uk.